Process for Diagnosing Autism

[Starry Night]

My son is 3 1/2 and has just had his first child development assessment due to a speech delay and his pediatrician's concerns about possible autism. We waited nearly a year for this assessment and had pinned all hopes for an answer on it. Well, no official diagnosis but the doctor does think it is autism. I really felt blind-sided but am slowly coming around. However, there has been no official diagnosis and the doctor/specialist made it sound as if there are multiple more assessments to come.

I know each country is probably different (I'm in Canada), but what is all required to make that diagnosis? My husband and I are trying to guess where he'd fall on the spectrum. He was slow to hit his mobility milestones but he's now pretty terrific. Of course, I thought he was good at socializing and play but apparently those were the first things that tipped the specialist off (minimal eye contact, atypical play, strange pitch of voice, etc). I've tried explaining to my family why the doctor says 'autism' but my family only answers with "all toddlers do that! Does that mean all toddlers have autism?" The signs seem subtle to me...

My head is reeling as I try to figure out what our futures will look like and what I need to do. I've started to look around for autism support sites and forums but it seems the autism community has a lot of in-fighting and I find that so distressing and intimidating. All the angry adults with autism make me feel like my son is going to grow up to hate me.

Sorry for the novel. Still trying to process everything.

 

[Thurinius]

First of all hugs to you. I know exactly how you feel. I was similarly blindsided by my son's diagnosis.
I knew he had a speech delay but his motor skills were excellent and his knowledge for numbers, letters etc was growing each day.I foolishly thought that he'd start speaking and then everything would be OK.
Except when he started nursery approaching aged four it was instantly picked up.
The eye contact thing I hadn't noticed because at home he makes eye contact with us but he wouldn't look at any strangers. He wouldn't interact really with the other children. He was struggling to follow the routine.
We're in the UK and we saw a paeditrician who told us that it was extremely likely he was autistic. We had a home visit from a special needs health visitor who had lots of positive things to say about him but yep he was still likely to be autistic. We are waiting for the final diagnostic tests that will give him the label, waiting lists being what they are it'll probably be in June now.
But as everyone will tell you here. It's not all negative. I think the trick is to not look too far into the future. Just concentrate on your son how he is right now because nobody, not even the doctors will know what he'll be like when he's an adult.
My son is four now, his speech is slowly coming along with the help of a speech therapist. He's in a good nursery where he is joining in with activities and I have no doubt that when he starts school he will be similarly supported. Hope this helps a little bit. I know what a shock it can be..

 

[alibaba24]

I am not sure But from all the stories I have read it seems to depend where on the spectrum the child is. My friends son is textbook Autistic and he was diagnosed pretty much on the first assesment. My daughter has had 2 apppointments with her doctor who so far has now said after recieving the gars2 questionaire that it looks unlikely she has asd but to keep an open mind. At this point I don't know if she will be put forward for the ADOS or not we have a review in march x

 

[Starry Night]

Thanks. I know in my head I shouldn't look too far into the future but worrying is what I do.

I have to admit I also feel vindicated because I had been worried something was 'off' with him besides the speech delay and everyone told me I was nuts, paranoid, and the doctor was stupid for even referring him (the whole 'over diagnosis debate)etc.

Even DH thought the idea of autism was crazy and impossible. I had to argue with him the whole way home from the assessment because he still didn't accept it even though he had been there. You know, it's the whole "He's too social, he is too affectionate, you can tell he wants to communicate with us". That doesn't mean it's not autism. My son loves his friends in Sunday School but I could tell awhile ago already that he doesn't seem to know how to play with them. Unless they're playing chase or jumping or tackling, he doesn't care and will wander off. If they are doing something more complex he just stands at the sidelines and jumps up and down laughing and screaming. He doesn't care they aren't actually involving him.

He is my little darling though. I love his quirks and I know nothing has changed other than a name. His next assessment is on March 11th so I have to take it from there.

 

[Thurinius]

Thanks. I know in my head I shouldn't look too far into the future but worrying is what I do.

I have to admit I also feel vindicated because I had been worried something was 'off' with him besides the speech delay and everyone told me I was nuts, paranoid, and the doctor was stupid for even referring him (the whole 'over diagnosis debate)etc.

Even DH thought the idea of autism was crazy and impossible. I had to argue with him the whole way home from the assessment because he still didn't accept it even though he had been there. You know, it's the whole "He's too social, he is too affectionate, you can tell he wants to communicate with us". That doesn't mean it's not autism. My son loves his friends in Sunday School but I could tell awhile ago already that he doesn't seem to know how to play with them. Unless they're playing chase or jumping or tackling, he doesn't care and will wander off. If they are doing something more complex he just stands at the sidelines and jumps up and down laughing and screaming. He doesn't care they aren't actually involving him.

He is my little darling though. I love his quirks and I know nothing has changed other than a name. His next assessment is on March 11th so I have to take it from there.

We both struggled with the diagnosis too because our son is so cuddly and very caring towards his little brother when he's upset. I really couldn't believe it but slowly with every health professional telling you the same it sinks in.
But I love my son and I can't separate what is him and what is the autism, because it's all him. Even knowing his excited dance is an autism trait I still love it, I still love his need to,point out every number on a journey to me, I still love his bloody mindness that he can do things but refuses to be a performing monkey, that he likes to play with blueberries, that's he's memorised all the tv channels.
He's clearly going to be different. But he's my boy and I love him for being him.

 

[Starry Night]

Someone who gets it! I needed that. Your guy sounds similar to mine. He is so careful with his baby sister and just loves her to pieces. Of course, it's now fuelled a baby obsession so he likes to smother all babies with love and affection.

And both DH and I, while not autistic ourselves, are both socially awkward and eccentric and love quirky weird things (in a non-ironic, hipster way) so a son like ours has always been up our alley. We haven't laughed so much as we have since he was born.

We almost lost him several times during the pregnancy and the delivery so he's definitely our miracle.

 

[Thurinius]

Someone who gets it! I needed that. Your guy sounds similar to mine. He is so careful with his baby sister and just loves her to pieces. Of course, it's now fuelled a baby obsession so he likes to smother all babies with love and affection.

And both DH and I, while not autistic ourselves, are both socially awkward and eccentric and love quirky weird things (in a non-ironic, hipster way) so a son like ours has always been up our alley. We haven't laughed so much as we have since he was born.

We almost lost him several times during the pregnancy and the delivery so he's definitely our miracle.

So like us! I think partly the reason we didn't notice our son was autistic was that we are both socially awkward and shy. My husband is from generations of lonesome farmers so we just thought my son was following suit!

Be assured not every autistic kid is violent. My son so far aged four is rather placid.

 

[Starry Night]

Well, we got a letter back from the children' shospital and it looks like there are several more assessments we need to do before we see the main specialist and discuss the final diagnosis and where we go from there. I know we have a more thorough assessment on Mar 11th as I previously mentioned, but we also have to have a hearing test first. My son's pediatrician referred him for one back in July and we still haven't even heard back about an appointment. So who knows how long this will take.

Of course, now that I've been made aware of how subtle the signs for autism can be, it makes me start to wonder how many people in my life are going un-diagnosed. I am sort of curious about my 8YO nephew as he punches himself in the head when he gets frustrated with himself, is an even pickier eater than my son, my brother says his sense of smell is very strong (he gags alot) is OBSESSED with superheroes (has the entire MARVEL encyclopedia memorized) and loves to play superhero guessing games and makes everyone play them until we're all sick to death of it and he just doesn't care. But I could also just be reading into things right now. LOL I live far away so I only see this behaviour over our weekly Skype chats.

My brother was the loudest of the "your son doesn't have autism, that is dumb to think that" so I'm not about to bring it up!

 

[PresqueVu]

He's clearly going to be different. But he's my boy and I love him for being him.

This, completely!

We struggle sometimes with what we are finding out about our boy but ultimately it doesn't change a thing - just gives us access to some better coping mechanisms and a bit more of the 'he's a bit different here...and this could be why' which does help a lot.

There is so much more support available now, and there are a lot of adults I think going undiagnosed. Social stories are working well for our boy and we've been doing a lot of extra work (school and home) to teach him things about situations, emotions and people that most children pick up organically. Our one has to be taught some emotions and reactions just like maths, but he's picking up on it.

It's such a wide ranging thing, and it isn't so much about what they have but about how they can be supported with it. Like any child, there is so much to love about the different aspects of them, whatever you may call it

 

[alibaba24]

Thanks. I know in my head I shouldn't look too far into the future but worrying is what I do.

I have to admit I also feel vindicated because I had been worried something was 'off' with him besides the speech delay and everyone told me I was nuts, paranoid, and the doctor was stupid for even referring him (the whole 'over diagnosis debate)etc.

Even DH thought the idea of autism was crazy and impossible. I had to argue with him the whole way home from the assessment because he still didn't accept it even though he had been there. You know, it's the whole "He's too social, he is too affectionate, you can tell he wants to communicate with us". That doesn't mean it's not autism. My son loves his friends in Sunday School but I could tell awhile ago already that he doesn't seem to know how to play with them. Unless they're playing chase or jumping or tackling, he doesn't care and will wander off. If they are doing something more complex he just stands at the sidelines and jumps up and down laughing and screaming. He doesn't care they aren't actually involving him.

He is my little darling though. I love his quirks and I know nothing has changed other than a name. His next assessment is on March 11th so I have to take it from there.

We both struggled with the diagnosis too because our son is so cuddly and very caring towards his little brother when he's upset. I really couldn't believe it but slowly with every health professional telling you the same it sinks in.
But I love my son and I can't separate what is him and what is the autism, because it's all him. Even knowing his excited dance is an autism trait I still love it, I still love his need to,point out every number on a journey to me, I still love his bloody mindness that he can do things but refuses to be a performing monkey, that he likes to play with blueberries, that's he's memorised all the tv channels.
He's clearly going to be different. But he's my boy and I love him for being him.

My daughter used to point all the numbers out too she stopped once her language came on. I think she just understood numbers and wanted to chat. It was good in hindsight that she was telling me about them though and your son is sharing it with you which is great x

 

[lusterleaf]

I am in the US but I called my local Early Intervention hotline (initially for speech delay) and they sent out evaluators to me to assess my DS. It was the psychologist who diagnosed DS with ASD.

 

[Starry Night]

We've been seeing a specialist doctor at the children's hospital in our province's capital city. It's a general child development unit, I believe, where they look into all facets -- physical, speech and cognitive.

I did hear back from the hospital again and it looks like we go back on March 19th to discuss the results of the assessment on the 11th and then go from there. So, not so long a wait as I had thought.

Still no word on the hearing test though. I see my kids' pediatrician on the 9th for my daughter's 9 month checkup so I'll ask about it then. The doctor has been asking after my son at all of her checkups. Right now it's fairly obvious she's far better at eye contact and engaging, etc. The specialists were even impressed with her.